May 10, 2009 - Sunday
My Life My Viewpoint
Category: Life
In the past I listened to a lecture given by Dr. Wayne Dyer on the subject of 'The Power of Intentions'. I found myself laughing
with joy and came away feeling uplifted and ready to face demons.
Catch phrases such as:
'When you change the way you look at things; the things you look at change'.
and 'Contemplate the condition you want to produce'.
Given with examples of explanation were truly food for thought. The thought that we are not humans looking for spirituality but
Spirits having a human experience put a whole new slant on things for me.
I was born with a condition labeled CMT (Charcot-Marie-Tooth)
An Overview of Charcot-Marie-Tooth Disorders
Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder, affecting approximately 150,000 Americans.
CMT is found world-wide in all races and ethnic groups. It was discovered in 1886 by three physicians, Jean-Martin-Charcot,
Pierre Marie, and Howard Henry Tooth.
CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles
in the extremities become weakened because of the loss of stimulation by the affected nerves. Many patients also have some
loss of sensory nerve function.
CMT is one of the 40 diseases covered by the MDA, but unlike muscular dystrophy, in which the defect is in the muscles, CMT is a
disorder in which the defect is in the nerves that control the muscles.
CMT usually isn’t life-threatening and almost never affects brain function. It is not contagious, but it is hereditary and can be
passed down from one generation to the next.
CMT... is also known as peroneal muscular atrophy (PMA) and hereditary motor sensory neuropathy (HMSN).
...is slowly progressive, causing deterioration of peripheral nerves which control sensory information and muscle function of the
foot/lower leg and hand/forearm.
...causes degeneration of peroneal muscles (located on the front of the leg below the knees).
...causes foot-drop walking gait, foot bone abnormalities, high arches and hammer toes, problems with balance, problems with
hand function, occasional lower leg and forearm muscle cramping, loss of some normal reflexes, scoliosis (curvature of the
spine) and sometimes, breathing difficulties.
...does not affect life expectancy, but can, in rare instances, cause severe disability.
...has no cure, although physical therapy, occupational therapy and moderate physical activity are beneficial.
...is sometimes surgically treated.
...is usually inherited in an autosomal dominant pattern, which means if one parent has CMT there is a 50/50 chance of each child
inheriting the disorder.
...may become worse if certain neurotoxic drugs are taken.
...can vary greatly in severity, even within the same family.
Characteristics and Symptoms of CMT
Although there are many different genetic causes of CMT, all types tend to have remarkably similar symptoms. What follows is a
general description of these symptoms. Individual patients may not experience all of these symptoms, and the severity of the
symptoms may vary greatly from one person to the next.
A high arched foot is usually one of the first signs of this disorder, although in some instances extremely flat feet are also typical
of CMT. As the disease progresses, structural foot deformities take place. The patient may develop a pes cavus (high-arched)
foot and hammer toes.
The progressive muscle wasting of CMT also leads to problems with walking, running, and balance. Ankle weakness and sprains
are common, and many patients develop foot drop. To avoid tripping, patients with foot drop raise their knees unusually high,
resulting in the high “steppage” gait associated with CMT. In some patients, muscle weakness may also occur in the upper legs.
Later in the course of the disease, hand function may become affected. Progressive atrophy of the thenar muscle and the small
muscles in the hand results in weakening or loss of the opposable pinch, and tasks requiring manual dexterity become difficult.
Patients have problems holding writing utensils, buttoning clothing, grasping zipper pulls and turning doorknobs. Many people
benefit from occupational therapy which helps people accomplish the tasks of daily living with the use of assistive devices.
The loss of nerve function is often accompanied by tingling and burning sensations in the hands and feet. This usually causes
little more than mild discomfort, but some people experience severe naturopathic pain and require medication to control it.
At the same time, loss of nerve function in the extremities can also result in sensory loss. The sense of touch is diminished, as is
the ability to perceive changes in temperature, and patients may unknowingly injure themselves. They can be unaware of having
developed ulcers of the feet or of cuts or burns on the hands. Sensory loss in CMT patients may also be associated with dry skin
and hair loss in the affected areas. In rare cases, sensory loss can lead to gradual hearing impairment and, sometimes, deafness.
Sensory loss notwithstanding, many patients are extremely sensitive to the cold or even to temperatures a few degrees lower
than normal. The “stocking-glove” pattern of atrophy results in the loss of insulating muscle mass, which, combined with
reduced muscular activity and circulation, can leave patients with chronically cold hands and feet. Impairment of the normal
circulatory process can also result in swelling (edema) of the feet and ankles.
In many patients, deep-tendon reflexes, such as the knee jerk reaction, are lost. This does not cause any particular problem but
is often noted on physical exams. Some people with CMT also have tremor (usually of the hands) and the combination of tremor
and CMT is sometimes referred to as Roussy-Levy Syndrome.
Weakness of the respiratory muscles is in rare in people with CMT, but when present, it can cause life-threatening problems. If
shortness of breath is an issue, a patient should be checked by a respiratory specialist to see if the use of a ventilator is
recommended.
Another problem related to CMT can be scoliosis or mild curvature of the spine. This often occurs in puberty and tends to be
most common in people with early onset of gait abnormalities. (Click here for more information about scoliosis.) Hip dysplasia
also affects a small number of CMT patients at an early age.
As noted, the severity of symptoms can vary greatly from patient to patient, even within the same family. A child may or may not
be more severely disabled than his/her parent. Some family members may experience significant impairment and require bracing
while others have no noticeable symptoms but are found to have CMT upon examination by EMG or nerve conduction studies.
This is a lot of information to wade through on a blog but this situation has been a determining factor on the way I looked at life.
There were no dance parties or sports events in my childhood. I was made to feel as though I was broken merchandise. I became
internalized and self conscious. I ran away from home at 17, married and had my first child at 18. With a bit of guidance I might
have become an artist instead. Ah, but our choices are the determining factor, not the behavior of our parents and supervisors. I
proceeded to live my life as if there was no physical problems and had 7 children, while others suffering from the same condition
preferred to coddle the symptoms and live very carefully. I raised my children, worked as a school bus driver, then a city bus
driver and finally ended my work experience as a bookkeeper for a construction company.
There are those who might say it was wrong for me to have so many children and doubly wrong to have children when I suffered
from a disease that was hereditary. As a matter of fact the doctors nor myself knew what we were dealing with when I began my
journey. In fact Doctors are still not agreed on the facts and very little healthy help is available.
The point of this whole blog is to put out there the news that Dr. Dyer has a point!
'When you change the way you look at things; the things you look at change'. Alas...The change may not be all you hope for.
My life was not lived with the music left inside simply because I did not live to coddle the symptoms of my disease but rather
faced my fears and did what I had to do when it needed to be done.
I have not finished I am still: 'Contemplating the condition I want to produce'. However; the symtoms in my case have become
more severe in advanced age and I find myself more confined.
Now I find all must be 'Empty and Meaningless' making me free to invent the person I want to be.
Ah........... but what miracle will inform my body it can be whole now? I'm willing to keep seeking that 'miracle'.
CMT part 1
CMT part 2